Decision-making with children, young people, and parents

The origin and importance of support in decision-making in paediatric palliative care (PPC) is rooted in its primary goal: to reduce suffering and maintain and even improve the quality of life of seriously ill children and their families. Decisions take place throughout the trajectory of a child’s illness and many are straight forward and barely noticed. However, often at pivotal points such as changes in treatment plans and the focus of care, the outcomes of the decisions assume much more importance and how they are made becomes a significant task for the family and clinicians involved

Children's views of death

Death is very much a part of the everyday thoughts of children. It is part of the games they play, the stories they hear, and the videos they watch. Sadly, for some children it is also part of their everyday lives—their lived experience in the face of a life-threatening illness, war, violence, or natural disaster. Starting from the position that a child is a sentient, social, emotional, spiritual being embodied in a biological organism we look at how children’s views develop, and how they are manifest in art, play, and conversations with family, friends, and professionals. We see children as active agents in their worlds—interpreting the behaviour of others and acting on the basis of those interpretations. Children see, sense, and notice, and correspondingly, register and make inferences from what they observe inside and outside of themselves. We attend not only to age and stage of development, but also to the dynamic relationship between age, stage, and experience as they come to bear on the children and their worlds at given points in time. Working from this perspective we explore children’s views of death and dying in a variety of situations, from a variety of perspectives—cognitive, cultural, social, and emotional—as a first step in developing guidance for talking with children who are themselves ill and dying, and their siblings. We address three questions and offers suggestions for talking with ill children and their siblings about death: 1. What do children know and understand about death and dying? / 2. Where do children’s ideas about death and dying come from? / 3. How should we address their questions and concerns on this most fundamental question of human existence? The chapter draws on an extensive review of the literature on well and ill children’s views of death as well as the co-authors’ ethnographically based research with ill children, their parents, siblings, and clinicians involved in their care and treatment; highlighting the social nature of death and dyin

'I have to live with the decisions I make': laying a foundation for decision making for children with life-limiting conditions and life-threatening illnesses.

The relationship between parents and clinician is critical to the care and treatment of children with life-limiting conditions (LLCs) and life-threatening illnesses (LTIs). This relationship is built and maintained largely in consultations. In this article we lay out factors that bear on the success of clinical consultations and the maintenance of the essential clinician-parent relationship at progression or deterioration of LLCs or LTIs. We suggest an approach to engaging parents in conversations about care and treatment that recognises and appreciates the dilemmas which clinicians and parents face and in so doing provides a way for everyone to live with the decisions that are made. A close analysis of a consultation at progression and excerpts of encounters among parents, clinician and researcher are used to illustrate our approach to research, analysis and development of recommendations for clinical practice

Insights into the perception that research ethics committees are a barrier to research with seriously ill children: A study of committee minutes and correspondence with researchers studying seriously ill children

BACKGROUND: Research ethics committees are commonly perceived as a 'barrier' to research involving seriously ill children. Researchers studying seriously ill children often feel that committees view their applications more harshly compared to applications for research with other populations. Whether or not this is the case in practice is unknown. AIM: The aim of this study was to explore committees' concerns, expectations and decisions for research applications involving seriously ill children submitted for review in the United Kingdom. DESIGN: Content analysis of committee meeting minutes, decision letters and researcher response letters. SETTING/PARTICIPANTS: Chief investigators for National Institute of Health Research portfolio studies involving seriously ill children were contacted for permission to review their study documents. RESULTS: Of the 77 applications included in this study, 57 received requests for revisions at first review. Committee expectations and concerns commonly related to participant information sheets, methodology, consent, recruitment or formatting. Changes were made to 53 of these studies, all of which were subsequently approved. CONCLUSION: Our findings suggest that committees review applications for research involving seriously ill children with the same scrutiny as applications for research with other populations. Yet, the perception that committees act as a barrier to this type of research persists. We suggest that this perception remains due to other factors including, but not limited to, the high levels of formatting or administrative revisions requested by committees or additional study requirements needed for research involving children, such as multiple versions of consent forms or participant information sheets

Use of buccal morphine in the management of pain in children with life-limiting conditions: Results of a laboratory study

BACKGROUND: Children and infants with impaired swallow or compromised enteral absorption require alternative routes for administration of analgesia. Recent clinical guidance and practice for paediatric palliative care teams, who often treat such children, supports buccal morphine sulphate as a fast acting, effective and easily administered agent for pain relief. However, a consideration of the physicochemical properties and potency of morphine would suggest that it is not a suitable candidate for delivery via the transmucosal route, raising questions about its use in children and infants. AIM: To explore the permeability of buccal morphine sulphate in an established ex vivo porcine buccal mucosa as a necessary step in examining efficacy for use in children with life-limiting conditions and life-threatening illnesses. DESIGN: A permeation study conducted with morphine sulphate in an ex vivo porcine buccal tissue model. Flux values and pharmacokinetic data were used to calculate the plasma values of morphine that would result following buccal administration in a 20kg child. RESULTS: Results show that the estimated steady state plasma values of morphine sulphate following buccal administration in this model do not achieve minimum therapeutic concentration. CONCLUSION: These data strongly suggest that morphine sulphate is not suitable for buccal administration and that further research is needed to establish its efficacy in relief of pain in children with life-limiting conditions and life-threatening illnesses

Children's and Parents' Conceptualization of Quality of Life in Children With Brain Tumors: A Meta-Ethnographic Exploration

The concept of quality of life (QoL) is used in consultations to plan the care and treatment of children and young people (CYP) with brain tumors (BTs). The way in which CYP, their parents, and their health care professionals (HCP) each understand the term has not been adequately investigated. This study aimed to review the current qualitative research on CYP, parents' and clinicians' concepts of QoL for CYP with BTs using meta-ethnography. Six studies were found, which reflected on the concept of QoL in CYP with BTs; all explored the CYP's perspective and one study also touched upon parents' concept. A conceptual model is presented. Normalcy (a "new normal") was found to be the key element in the concept. This study calls for a conception of QoL, which foregrounds normalcy over the more common health-related quality of life (HRQoL) and the need to understand the concept from all perspectives and accommodate change over time

The Physical Health of Caregivers of Children With Life-Limiting Conditions: A Systematic Review

CONTEXT: Parental caregiving for a child with a life-limiting condition (LLC) is complex physical and mental work. The impact of this caregiving on parents' physical health is unknown. OBJECTIVES: (1) To review existing evidence on the physical health of parents caring for a child with a LLC and (2) to determine how physical health of parents is measured. DATA SOURCES: Medline, Embase, PsycINFO, and Cumulative Index of Nursing and Allied Health Literature were searched. STUDY SELECTION: Peer-reviewed articles were included if they reported primary data on the physical health of a caregiver of a child with a LLC. Studies were excluded if they described only the caregiver's mental health or if the caregivers were bereaved at the time of data collection. DATA EXTRACTION: Of 69 335 unique citations, 81 studies were included in the review. RESULTS: Caregiver health was negatively impacted in 84% of studies. Pain and sleep disturbance were the most common problems. Ways of measuring the physical health of caregiver varied widely. We found an absence of in-depth explorations of the social and economic contexts, which could potentially mitigate the impact of caregiving. Furthermore, we find health interventions tailored to this group remain largely unexplored. LIMITATIONS: Studies were heterogenous in methodology, making comparisons of results across studies difficult. CONCLUSIONS: These findings support the need for improving access to interventions aimed at improving physical health in this population. The rate of health-seeking behaviors, preventive health care access and screening for health conditions is understudied and represent important directions for further research